Patient Leader

I am a 38 year old patient advocate living with Systemic Scleroderma. I was diagnosed as a teen. I have found that by spreading awareness and telling my story other young patients like me can see that even though it isn’t easy life can still be beautiful and amazing! I also run a Social Media Support Group, I’m a Contributor on “ The Mighty”, I am on the Patient Advisory Board for the SPIN foundation, and a Public Speaker. I have gone to Washington DC to Advocacy for Scleroderma and speak with Congress to help our disease fund research and I have opened my life up to helping my Community anyway I can!


West Seneca, NY


Advocating For Another Best in Show: Facebook Lifetime Achievement Best in Show: Twitter Patient Leader Hero

I would like to nominate Amy Gietzen for her Facebook page, Staying Alive With Scleroderma. She has over the last 7 years taken her illness and transformed it into a site for communication and education among her friends and others all around the world. Her daily posts talk about her life struggles with Scleroderma to bring awareness to others.  — Christine

She is so generous with her time to help so many people with a rare disease, scleroderma. Ahe is informative and calming. Supportive and understanding. She makes us feel like we can do anything regardless of our limitations and that we are not alone. Ahe raises money for the disease, and diacusses awaremess to a hidden disease.  — Amanda

Amy is a fighter. She doesnt give up. She takes what life has given her and teaches others how to adapt with an open mind and beat the emotions you will be overwhelmed with day to day. She educates, gives tops and advice, and is caring and compassionate. She is devoted to helping others with Scleroderma. Amy also is active in the community helping.  — Amanda

She goes above and beyond to help those in our small sclerod4mq family while spreading awareness to others.  — Tracy

Amy is a wonderful woman living with a disease that is killing her. She is always smiling - as much as her tightening skin allows her - and filled with joy of life. Her dreams of a nursing career, marriage and children have been destroyed by this disease, but she has found a new career with her FB site, supporting and educating others. E.DohertyMD  — E

Always trying to help other with their llness. Great patient advocate. Makes others in the heath care, community and private sector award of scleroderma and help to better coordinate care. Very compassionate of other and knowledgeable regarding her condition even when she is suffering herself. Has established a on line group with 2500 followers.  — Claudia


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